How To Respond?

I am newly diagnosed and am looking for suggestions on replies to other people's comments, such as "what happens if you eat wheat?" Or "how can you do It? I'd die if I couldn't eat wheat!?" Or " how's your tummy?" I want to scream. My tummy? It's not a stomach ache! Are people really that uninformed? Even before I was diagnosed I knew what Celiac was.. Yes, my sister and brother have it, but I think I would still know something about it? And, no, it isn't easy, but I don't have a choice. I don't want to be insensitive or rude in my replies, but I am having a hard time.

I use such questions as opportunities to educate people. I've found that when I discuss it openly and in a knowledgeable fashion, people seem drawn in and begin to wonder if they or people they know have it. It helps to point out how common celiac disease is and how few people have been diagnosed. Tell them it's a genetic, autoimmune disease that affects the absorption of nutrients and hormones, and that's why the symptoms can vary so greatly. You can list some of the common ones (anemia, bone and joint pain, migraines, infertility, tooth enamel defects, etc.). If people want to hear more, you can tell them about cross-contamination and how even one molecule can spell trouble for a person with celiac. Believe me--people will have more questions as they suddenly realize that they, themselves, may have this very disease...or gluten sensitivity. Also, with regard to the diet, you can tell them that you simply eat like a person from an earlier century, which is a more healthful way to eat--it helps you absorb more nutrients and will help you live a longer, more healthful life. You don't have to shame them for their eating processed foods--merely point out that society has gotten away from eating "real" foods and that you're enjoying your new lifestyle even though it makes eating at social events somewhat tricky....and that's why you have to bring your own food.

My diagnosis was a complete surprise. I didn't even know I had had a biopsy until I got a call with the results. No, I didn't know what celiac was before that and many people don't. I don't expect people to know what it is. I don't have a problem explaining it either, or with general ignorance. It is the insensitivity that bothers me. "I'd just kill myself if I had that!" Really? So you just said to me that my life is literally not worth living without the same bread you eat? I call people on exactly that too. I am so done with insensitive pricks. And that is what they are. Would someone respond to another person's cancer diagnosis with "I'd just kill myself if I had to go through chemo!"? No!!! So why are celiacs, and we alone, treated like this? It isn't right and I tell people that they should have a little more sensitivity instead making insensitive comments they wouldn't dare make to someone with pretty much any other disease or illness. I actually had someone with cancer make that exact comment to me, and when I reversed it on her she realized how incredibly rude she was being.

This isn't some fad. This isn't some made up disease. This isn't any less serious than any other disease just because we can't pop a pill for it. I'm actually thankful that it is so easily treatable. At any rate, my go to at this point is "That is an incredible level of ignorance. You wouldn't dare be that insensitive to someone with any other equally serious illness that is treated with medication instead of a special diet. This is far more serious than X (X being whatever they brought up, such as a tummy ache as you mentioned) and I suggest that before you go around offending more people with your ignorance you educate yourself about the disease or stick with a simple how are you feeling today?" Is it harsh? Yes, but like I said I'm way beyond done with the insensitive people. And I reserve this only for the truly insensitive, not for simple ignorance.

From my experience, my responses seem to depend on WHO I am talking to. If they are just nosy and think it is weird, I keep it short and simple. "I get really sick if I eat bread." "I throw up." or "It's like getting food poisoned." or "I eat healthy food." or "I'm 'allergic' to wheat." If they are just plain nosy, I don't owe them any explanation. I will eat and do what is best for me and it is none of their business!! Some are just curious because you eat different things, but if they show genuine care and concern, I will might take the opportunity to 'educate' them on the topic. I also do my best to not make it a big deal when talking to friends, but that's just me. Yes, I am VERY serious about the gluten-free lifestyle I now live. However, I feel like if I was to make it a big deal, then they would make it a big deal and I would feel even more socially isolated since food is just about at every social event. When it comes to dining out, on the other hand, definitely speak up to ask questions to the waiter or manager and those around you will be able to tell how important it is to be serious about your health.

On my journey to healing (still there), I realize that no one will ever understand how I feel or will they ever know what it is like having celiac. It is frustrating. On the other hand, I can only hope that I (along with others on a gluten-free/SCD/Paleo diet for health reasons) serve as an inspiration to others. It is by no means easy and if anything, I hope that somehow their heart is stirred with thankfulness that they can eat those delicious foods that I can't rather than 'feeling-sorry-for-the-girl-who-can't-eat-a-cupcake.'

You can keep your responses as short or long as you want. Take charge of the conversation and point it whichever direction you choose, even if that means changing the subject (they'll get the point!). Share only what makes you comfortable! At the beginning, food and celiac is a pretty sensitive topic (for me, it still is sometimes) and those around you should be able to pick that up. I remember asking your same question when I was first diagnosed (over a year ago). It'll come with time. There will always be people asking questions, so it is a 'skill,' if you will, that will develop. Hang in there.

As a Celiac/Gluten Intolerant person, we're all going to get questions and deal with ignorance. I'm one of those people who tends to go on and on about it if you get me going. But then again, it's usually my fault with the "I can't eat any of this" or "Yay! Gluten free [insert exciting food here]"

Best thing is to keep it simple and factual. No, it's not an allergy. It's an auto-immune disease (it's important to emphasise that it IS and DISEASE. You can't do anything about it) that damages the intestines, prevents absorptions of nutrience, and can cause all kinds of fun problems from digestive issues to cancer. The only way to treat it is to not eat ANY gluten whatsoever, even the tiniest crumb, or food prepared on the same surfaces or cooked in the same oil as gluten. It's also important to say that it's not like an anaphalatic reaction (for most people), so it's not like you'll keel over on the spot, but the symptoms can last several days and damage can take a few weeks to heal.

But also say that eating gluten free makes you a happier and healthier person. I always say "Either the gluten will kill me, or I'll kill someone else in the process. Whichever happens first" (ie: you don't want to deal with me after a glutening, therefore, you don't want me to accidentally eat any of it. Comprende?)

Most people will understand, or at least accept your explanation. There are some assholes out there, but as long as their ignorance doesn't interfere with your will-power, then all should be fine. Eating gluten free is tough, but it's not so bad when you know it keeps you happy

So, stand your ground, look at it as an opportunity to educate, but don't feel you have to explain anything unless you don't want to (unless they're the one cooking/serving, in which case, a flat-out "What's in it? Is there any? No, I can't eat that" and that's that, is necessary.

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.

Thanks everyone! I am sure my frustrations have to do with more than just questions from others. I am still adjusting and learning...and waiting to feel better. Anyway, my friend who always asks how my tummy is texted again today. I took her question as genuine concern and responded with a thorough explanation. I got a "wow" response. I feel better thinking that she is really concerned and not insensitive, and I am looking forward to explaining it to the lady at work who "would die if she couldn't eat a donut."

I find folks don't necessarily want to much detail. I tend to brush it off and say it's like having a very bad flu. For a week. This works well for folks who say 'don't you miss it' or 'just try it, have a bite' whatever. Would you eat something if it took you out & gave you ALL the symtpoms of a bad flu???? Stomach cramps & the work (leave the rest to their imagination, most people have had a flu...eww).

Chances are they know someone who is sensitive - and I wil point out the difference. Sensitive *can* be like lactose intolerance - you can handle a bit of gluten, I have zero tolerance, even a bit makes me sick.

IMHO, best way for folks to get it is to see I never, ever eat it - it's not a diet fad (oh, don't get me started), it's a very real condition with consequences!